Try Defying Gravity

Perhaps I’m hiding my head in the sand.

I don’t want to debate why the new CDC autism numbers are where they are. I don’t want our community to fracture even more in the discussion of environmental vs genetics vs better diagnosis vs new classification.

I just want my sons’ teachers to understand how their brains work so they can learn better.

I just want my sons and their peers to grow up knowing that autism is not something to fear and that they can be friends.

I want the numbers to stand for more than debate.

I want them to promote change in our school systems and our insurance laws and our mental health services.

The 1 in 88 children. The 1 in 54 boys. My two.

My Facebook newsfeed is full of arguments about the “why”.

I want to see the “now what.”

“What about now?
What about today?
What if you’re making me all that I was meant to be?
What if our love never went away?
What if it’s lost behind words we could never find?
Baby, before it’s too late
What about now?” – What About Now? by Daughtry

It was an Oxygen Mask trip of a different kind.

My brother and sister-in-law had a brand new baby. They live in Arizona. I wanted to – NEEDED to – visit them.

A much needed getaway for me.

And I took Gerry. A much needed getaway for him too.

Just the two of us.

Pushing aside my maternal guilt and anxiety of leaving the other two with Tim, Gerry and I hopped on a plane last Friday and spent the weekend together.

Just us.

We ate what we wanted.  We watched The Muppet Movie.  We drank too much Sprite and overdosed on Twizzlers.

We talked.

My brother took him to hit golf balls and they played catch.  And they talked.

He smiled more than I have ever seen him smile.

It’s not the answer to everything.  But for one weekend, it was just about us.

Some breathing room for us both.

“I’d fly above the trees
Over the seas in all degrees
To anywhere I please

Oh I want to get away
I want to fly away
Yeah yeah yeah” – Fly Away by Lenny Kravitz

There was another hero there that morning with Eustacia Cutler.

He was sitting two seats over from me.  A man, slightly balding, sitting quietly just like the rest of us.

I was so engrossed in Mrs. Cutler’s words that I didn’t even notice him.

Until he stood up to speak during the Q&A session.

He raised his hand and was given the microphone.  His voice shook a little.

He introduced himself as a 55 year old man with a brother with autism.

His brother is non-verbal.  He wants help and advice from Mrs. Cutler on how to reach him.  Or, more directly, can he still be reached?

“Of course,” replies Mrs. Cutler.  She’s trying to feel him out more, get more information on what he means and how he connects now with his brother.

“We were estranged for a long time.  I’ve just started to see him again.   You see, Mrs. Cutler…” His voice trails a little. “My parents did the reverse of what you did.  My parents put all their focus on me and my other siblings.  Not my brother.  It was no fault of theirs.  It was they knew to do at the time.”

I let out all the air I had been holding in.  My friend Jess touches my shoulder.  She knows.  This is too much.

The sibling thing.  The balance.  The feeling like you’re sacrificing one child’s needs for another.  Not knowing what is right or wrong but just hoping you’re doing the right thing.

Mrs. Cutler writes in the preface of “A Thorn In My Pocket” that her other three children asked not to be included in book.  She writes  “While trying to help Temple, I left them in the dark. Temple and Daddy were the stars – the siblings and I, minor constellations circling uneasily around them.”

She said that autism needs to be viewed as a family issue.  That all the family members need counseling on the disorder.  Too often, she said, the siblings become helpers.  “Children should be children,” she said.

And here was this man – this 55 year old man – still coping with trying to figure it all out.  After fifty-five years, autism was still an family issue.

**********

I knew I had to talk with him.

After getting my book signed, I went up to the man.

“Hi,” I said, “I just wanted you to know how much it meant to me to hear your question about how to connect with your brother.  I think it’s pretty incredible that you’ve found your way back to him.  I have three boys, and my middle one is on the spectrum.”

(yes, I said just my middle one.  Somehow, my subconscious forgets that I have two kids on the spectrum. I don’t even want to think about what that implies.  It’s clear where my energy goes.  I’m ashamed to even admit that. Can we just move along…)

“Oh, thank you,” he said. “Yeah, it’s been great. You know, my parents.  They did the best they could.  They didn’t know…they didn’t know.”

He continued. “He’s up in Montreal and I go to visit him when I can. I bring my kids to see him.”

“I think that’s wonderful.  It’s great that they get to be with their uncle.” I was smiling.  My eyes were teary.

“Yeah, it is.  I don’t know if it really means anything to him, though. He seems happy to see me.  He likes to go out to eat, so we always do that when I see him.  He has his coat on already when I get there.”

I gulped.  Swallowing the tears.

“Well, there you go,” I said. “You are connecting with him.  It does mean something to him.  You found your thing.  I think that’s everything.  My oldest…he struggles to find that connection with his brother.  I’m so glad that you’ve found yours.”

“Well, yes.  I guess I have,” he said. “Thank you for sharing that with me.”

I shook his hand and said good-bye.  I turned back to Jess and tried to breathe.

**********

That night, Gerry came over to the dinner table and slumped into his chair.

“When will Howie open the Lego sets he got for his birthday?”

I looked over and there were two Lego building sets on the floor.  Howie had opened all his birthday presents and was playing with them one by one.  This is the classic difference between my two boys.  Howie opens one at a time, and perseverates on that one toy.  Then…moves on.  Gerry needs to open them all and put everything together immediately.  He couldn’t stand the fact that the Lego set had been sitting there all day.

“He will get to it.  Be patient.”

“But I told him I would help him with it.  I want to do this with him.  Why won’t he open it?”

“He will.  It’s his set.  In the meantime, why don’t you play with what he’s playing with?”

“I’m sick of Hot Wheels,” Gerry muttered. “I just wanted to find that one thing that we both liked doing together.”

He slunk off, back up to the safe haven of his room.

********

The man that I met that morning had his connection.  After all these years, he found his way back to his brother. They were bonding over their love of restaurants, connecting without even knowing it was happening.

He’s a hero.  A man who went against everything he knew and forged a path back to the brother he loved.  Unconditionally.

Sigh.

I know someday my boys will be heroes too.

But right now?

I don’t need them to be anything more that just brothers.

**********

Temple Grandin and Eustacia Cutler have set up a fund to help families address the needs of autism.  Find out more by clicking HERE

And to read the most incredibly moving and powerful essay on “innocence lost – the siblings”, click HERE

“And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive

So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you” – Hero by Mariah Carey

I’m departing from my usual song title here.

I have an article today on the MassMoms.com website titled “When You Meet The Parent of an Autistic Child”.  It’s five ways to help other parents understand me and kids like mine.

I’m so grateful to the Worcester Telegram for asking me to write this, especially as we approach April and Autism Awareness Month.

It’s my first article like this ever, so I’d love it if you’d click below and check it out.

Hopefully, the more clicks on the link they get, the more stories they’ll publish about our community.

And they told two friends…and they told two friends…

When You Meet The Parent of an Autistic Child

CLICK <HERE>

We throw the word hero around a lot.

Athletes are “heroic” when they lead their team to victory in the Superbowl.  Actors give “heroic performances” when playing an edgy role on film.

And yes, to many, they are heroes.

But for me, my hero is someone who has stood up against those who fought to tear them down.  Who do things that people say can’t be done, not for their own glory but for the sole purpose of helping another.  A hero, for me, is someone who takes the world on, holds that world on their shoulders, and carries the burden so that the rest of us can move freely.

I met such a person on Saturday.  Her name is Eustacia Cutler.   Temple Grandin’s mother.

**********

“Heading out to hear Eustacia Culter, Temple Grandin’s mother, speak about her life and about raising Temple. I cried three times just reading the prologue of her book “A Thorn in My Pocket”. I am so screwed today #bringingtissues – Try Defying Gravity’s Facebook status Saturday morning

I sat in the room with about a hundred other people.  I settled in to my seat next to my friend Jess.  I balanced my coffee, muffin and notepaper on my lap.

Mrs. Cutler came into the room.  She asked if we minded if she read some of her remarks because the words “cut close to the bone.”

My eyes welled up then and never stopped.

For two hours, this incredible eighty-five year old woman captivated the entire crowd.

I hung on her every word.

**********

I can’t read my notes.  I was scribbling so fast trying to keep up with everything she said that I can’t read my own writing.

I have snippets of phrases like “Autism is a buzz word, but no one knows what the buzz is about”, meaning that the world out there knows the word autism, but they don’t understand how to interact with our children.

I wrote “She keeps saying “our children’.

And then while giving the history of autism she said “Autism is old. Our unease with it is old.”

I have another half sentence of “autism can be soul destroying at first for the parent, you think you are no good as a parent and therefore no good as a person.”

And then these:

“You will come to terms with it, not like you thought you should.”

“There are no answers, only choices. Persistent choices. If it’s not working, change it.”

“You too will be changed.”

**********

I am truly having trouble processing all that she said.

But she did talk about one thing that, for me, “cuts close to the bone”.

Her book is called “A Thorn in My Pocket” for a reason.  She told a story about Robert Frost and how he came late to the lecture circuit.   Here’s the quote from her book:

Theodore Morrison, who knew Frost well, said that Frost also came late to lecturing and was never entirely at ease with it.

“I always carry something in my pocket I can touch when I’m talking”, he told Morrison, “so I’ll remember who I am.  Lately it’s been a thorn.”

The thorn, Mrs. Cutler said, represented identity.  A way of remembering who she is as a person, not just as Temple Grandin’s mother.

She said that “autism helped me learn.  But it was not enough.” She was an actress, a singer, a journalist, and now a highly sought after lecturer.

She rejected every convention at the time and forged her own path, knowing that the only way to help her children become fulfilled was for her to feel full too.

She needed her own identity.  So while her daughter’s autism was woven through the things she did, it wasn’t only about her daughter.  She did research for a local PBS station on autism, but she was the journalist.  She sang for veterans from the Korean War who were permanently injured, trying to pull the smiles back out of them.

She was – is – an autism mom…plus.

I have spent a lot of time recently thinking about what I want to do now.  As in the “you’re-in-this-next-stage-of-your-life-so-what-will-you-do” sort of way.  I had been looking at it as something that had to be separate – something not autism-related.

Up until this moment.

What Mrs. Cutler showed me is that you don’t need to escape the autism to find a piece of yourself.  You can embrace what you’ve learned from your child’s autism and then make it a part of what you do for you.

Like my friend did with her Lego club.  Or like what my friend is doing with her tennis camp.

I can take what I know about autism and sensory processing disorder and create my own passion from it.  It started with my son.  But now it can be about so much more.

**********

When Mrs. Cutler’s talk was over, many of us stood in line to get our books signed by her.

As I waited, I rehearsed in my head what I wanted to say.

I wanted to tell her she was my hero, but not in an overly fawning sort of way. I wanted to tell her about my boys and how amazing they are and how they take care of each other.  And how they make me laugh and cry.

I wanted her to know about The Oxygen Mask Project – that we were trying to help parents find that “thorn” in their pocket.  A way to remind parents that they need to take care of themselves in order to be there for their children.

More than anything, I wanted to keep my composure.  Do not cry.

When it was my turn, I got down on my knee and started gushing.

“Mrs. Cutler, it’s such an honor to meet you.  I know you hear this a lot but you are my true hero.  I have three boys, two on the spectrum.  I can’t tell you how amazing it is to be here with you today.”

(so much for not fawning.  Or sounding like an idiot)

She looked at my name tag so she could spell my name right.  And I continued talking.

“My friend and I started this website to do just what you were talking about.  Helping parents remember that they are more than just their kids’ caretakers.  It’s just like you talk about so much in your book.”

Mrs. Cutler looked right at me.

“It is so important,” she said. “If we don’t have ourselves, we have nothing.”

And with that, the tears started to fall again.

**********

There were people there that day who have written about that morning much more eloquently than I can. So when you can, please read HERE.  And HERE.

I have one more post in me about this life changing day.  I hope I can get the words out.

“And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive

So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you” – Hero by Mariah Carey

March 16, 2006

“It’s a little bit funny,

this feeling inside

I’m not one of those who can easily hide

I don’t have much money, but boy if I did

I’d buy a big house where we both could live“

March 16, 2007

“If I was a sculptor, but then again, no

Or a man who makes potions in a traveling show

I know it’s not much, but it’s the best I can do

My gift is my song, and this one’s for you“

March 16, 2008

“And you can tell everybody this is your song

It may be quite simple, but now that it’s done

I hope you don’t mind,

I hope you don’t mind that I put down in words

How wonderful life is while you’re in the world“

March 16, 2009

“I sat on the roof and kicked off the moss

Well, a few of the verses, well, they’ve got me quite cross

But the sun’s been quite kind while I wrote this song

It’s for people like you that keep it turned on“

March 16, 2010

“So excuse me forgetting, but these things I do

You see I’ve forgotten if they’re green or they’re blue

Anyway the thing is what I really mean

Yours are the sweetest eyes I’ve ever seen“

March 16, 2011

“And you can tell everybody this is your song

It may be quite simple, but now that it’s done

I hope you don’t mind,

I hope you don’t mind that I put down in words

How wonderful life is while you’re in the world“

“I hope you don’t mind,

I hope you don’t mind that I put down in words

How wonderful life is while you’re in the world.”

March 16, 2012

Happy 6th Birthday to the boy who changed…everything.

(lyrics from Your Song by Elton John)

so…um…yeah.

Monday I wrote this grand post about changing how I view Howie’s days at school.  Focusing on the academics.  The positives.  Not running right to the behavior sheet.  And not using that to determine the success of the day.

Yeah.

I hit publish on that post on Monday and Howie was home 15 minutes later.  And I tried.  I really did.  I waited to check his log sheet, going first to the work.  I asked how his day was and got the standard answer of “fine”.

And then I went to the log sheet.

I get a record of how he did on his behavior plan, separated out by each hour of the six hour day.  Only once that day did he “earn”.

The other remarks were “vocal outbursts at work requests”.  “Hit another child”. “Scratched me.” (from his aide).

When I ask him about it, he shouts “I don’t remember!” and runs away.

Yup.  Right back again.

So there’s my confession.  I couldn’t even last a day without using his behavior as a measurement of success.

I had our regularly scheduled monthly meeting with his teaching team and BCBA yesterday.

They’ve taken weeks (months) of data.  We’re in crisis mode now.

His triggers are unpredictable.  All steps to keep him in the inclusion classroom full time have not worked.  His sensory toolbox is still being refined and he’s just learning to use it.

But it’s not quick enough for them.  They can’t identify what will cause the outbursts or aggressions before they happen, so they can’t help prevent it or even teach him how to prevent it.

And sure, we can look back and say “Oh well, he was getting sick so that’s why he was off that day.” Or “Daylight Savings Time throws him off every year.” Or whatever we define as the trigger after the fact.

But it doesn’t – and can’t – excuse the violent and aggressive behavior.

If we can be honest, we’ve been in this crisis mode since October.

It’s March.  Eight months into the school year.  And all the tweaking and fine tuning hasn’t worked.

Socially and behaviorally, he’s made no progress on any of his IEP goals.  None.  He’s actually regressed.

So here we have a kid who academically is shining.  But as I wrote on Monday, he just can’t be in the classroom to do it.  The large group time is just too much for him.

Too many distractions?  Sensory overload? Not enough good peer models?  Something else?

I told his team that I’ve basically put this year behind us.  That I hoped we’d start summer school and first grade fresh with a new plan and new goals.

The proposal now is pulling him out of inclusion for some portion of the day for direct teaching of behavior modification. “Compliance training“.

I told a friend those were my two least favorite words in the English language now.  Like, that’s the best name they could call it? Couldn’t we call it something more positive?

Maybe “Say Yes To The Dress?”

The team told us to think about it.  That we would need to sign off on the pull out of the inclusion class for the work.

I told them that he was already being pulled out of the classroom because he can’t be there.  Right now, it’s in response to inappropriate or aggressive behavior.  So if he can’t be there, why not have it be for a positive teaching reason? And perhaps the inclusion model isn’t right for him right now.

But that’s the hardest truth to swallow.  That’s the part that gets me.  My kid can’t be in the classroom.  He needs to be taught how to be in a classroom with 20 other kids.

The behavior that comes so naturally to other children is a constant struggle for Howie. The other kids need the academic instruction, my kid needs the behavior instruction. The social/behavioral goals are part of his overall educational success.

So while I’d really like to be that mom from Monday, the one that praises and focuses on the academic successes and accentuates the positives?

I can’t.  I just can’t.

The truth is much more complicated.

And if we’re being honest, I really really hate that.

“Honesty is such a lonely word.
Everyone is so untrue.
Honesty is hardly ever heard.
And mostly what I need from you. ” – Honesty by Billy Joel

Nothing like report card day. The double edged sword of your kid doing great academically coupled with 18.6 instances of noncompliance per day, 1.6 instances of aggression per day, 8.6 instances of vocal outbursts per day and .6 instances of violent language per day.

-A message I sent to a few of my autism mom friends

Friday was report card day.  Because I’m so with it these days, I had no idea until a friend posted something about it on Facebook.  It’s always a little source of anxiety for me because on the same day that we get the kids’ academic grades, we also get a progress report on Howie’s IEP goals.  We meet with his team monthly so there are usually no surprises, but I still get a little nervous waiting for the actual data.

And there it was again.  In black and white.

Howie’s academic report card was stellar.  Our school doesn’t give out the usual letter grades, but measures each kid’s progress against the content area set by the state.  So a kid is either beginning to understand the concepts, progressing towards the standard, meeting the standard or exceeding the standard.

In almost all areas, he’s meeting or exceeding the state standards for each content area. There were just a few progressing towards the standard areas in his ability to write using spaces and writing using conventional and inventive spelling.

Howie’s progress towards his IEP goals paints a different picture.  Here’s a kid showing 18.6 instances of noncompliance per day, 1.6 instances of aggression per day, 8.6 vocal outbursts per day, and 0.6 instances of violent language per day (data taken over a one week period).  During group instruction, he attended to the lesson without interfering behavior in 1 out of 5 opportunities.  He was able to identify a problem situation 100% of the time independently, but brainstorm solutions only 25% of the time independently.

Reading all this, my heart aches for my kid.  He can do the work.  He knows his stuff.  He just can’t sit there in the classroom and do it. And it means he’s working so incredibly hard to do the work while filtering out all the distractions.

Every IEP meeting, when the team asks us what our goal is for the coming year, Tim and I always say we want his teachers to see Howie for the incredibly smart, engaging, amazing kid that he is.  We want to help him learn how to control his challenging behaviors so he can be in the classroom and show off all that he can do.

We get so focused on those behaviors as being the measurement of his daily success in school.  I go right to his log sheet as soon as he gets home to see what kind of day he had.  We praise the days he “earned” and we talk about the challenges he had during the day.

I go through his work  and will pull out his worksheets to tell him that he did a good job.   And he’s proud – SO proud – on those days.

But still, his major measurement of success is still his behavior sheets.

Not anymore.  On Friday, I made a change.

**********

I sat Howie down when he got home from school Friday and for the first time we went through his report card together.  I explained to him what the letters meant and what it showed that he was learning.  I said “here, look it says you know all your uppercase and lowercase letters and can write them all!” and he’d respond with “yes, I can!”  And I said “right here it says you can skip count by fives and tens to 100”, and he said “I sure can!” and counted right there for me.

I hugged him and told him I was really proud of what a great job he was doing in school with his work.  He jumped up and down and went running off happily.

Later, at dinner, Tim told him that since he had such a good report card, he could stay up a little later and watch a special show with him and Gerry.  It’s usually Tim and Gerry’s special time together, but they were watching a show on aircraft carriers (thank you Netflix) and they thought Howie might like to join them.

“Oh yes!” came the answer.

**********

I really had no idea if any of this had really connected with Howie.

Until about an hour after dinner.

Howie asked if my mom could send him the special yogurt covered pretzels he likes.  There’s a store near her house in Vermont that sells them without corn starch or corn syrup, so he knows he can eat them.  I told her to give her a call and ask.

Usually, he tells me to do it.  Talking on the phone is very tricky for him.  Talking in person is hard, but the lack of connection over the phone lines makes any back and forth almost impossible for Howie.  Usually it’s pretty one sided.

Not this time.  For ten minutes, he had an actual conversation with my mother.

Yup, a conversation.  First ten minute conversation with her ever.

How do I know?  Two ways.  One, I could tell what she had asked him by his responses.

Two?  I heard him say “I’m going to stay up late and watch a show.” Pause as she asked him something. “Because my report card was AWESOME!”

**********

Awesome pretty much sums up the rest of the night.  Howie, Gerry and Tim stayed up to watch a documentary on an aircraft carrier.  Howie asked completely appropriate questions along the way, and Tim stopped the show to answer.  Gerry did too.  They ate pretzels together and had some juice.  When it was over, they talked some more about aircraft carriers until it was bedtime.

It’s part of my job as a parent to remember nights like this one.  I have to remember that it’s not all about the behavior.  We constantly praise the “green choices” and redirect for the “red choices”.  We work on social skills, sensory integration management and self-regulation.

But just like any other kid, my kid wants to feel proud of himself for something.  It’s too abstract for an almost six year old to be proud of a day with no “interfering behaviors”.  But a day with an awesome report card?

That…that makes sense to him.

There’s your positive reinforcement right there.

Man, they said we better
Accentuate the positive
Eliminate the negative
Latch on to the affirmative
Don’t mess with Mister In-Between
No, do not mess with Mister In-Between
Do you hear me, hmm? – AC-CENT-TCHU-ATE the positive